Research in progress

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Here you can find out about some of the research projects RNIB are currently involved in.

My Voice 2014

RNIB is carrying out new research into the circumstances of blind and partially sighted people in the UK. The information provided by My Voice 2014 will help us focus on what is important for blind and partially sighted people, and help us to put pressure on service provides and policymakers to make positive changes.

The last time a survey like this was conducted was nearly 10 years ago, and this study is going to provide an important update on the evidence and statistics we use. We will get insight into how the recession impacted on employment, how welfare reform has changed what benefits people are receiving, and how cut backs impacted on care services. The survey will cover a wide range of topics from technology to transport and early reach to domestic life. We have written the questions so that we can compare the situation of blind and partially sighted people to the general population.

Over the next six months, RNIB is sending out invitations to nearly 10,000 randomly selected blind and partially sighted people giving them the option to take part in the study. The reason we are sending out invitations like this is because we want to be to able to talk about the findings in relation to all blind and partially sighted people, and not just people who take part in the survey. Unfortunately this does mean we that we can only interview people who have been sent information about the My Voice 2014 study.

If you have a question about this project you can call us on 0800 028 8188 or email MyVoice@rnib.org.uk.

Other ways to have your voice heard

If you haven’t been sent an invitation to take part in the My Voice 2014 survey, there are still a number of ways you can have you voice heard. RNIB runs a series of panels for blind and partially sighted people where we talk about different topics, such as technology or transport. We also have a network of campaign supporters who make a difference locally and nationally.

Circumstances of blind and partially sighted people

RNIB is conducting research to update our evidence of the experiences and opinions of blind and partially sighted people in the UK. We are working in various sites across the country to develop a sample of over 1,000 registered blind and partially sighted people to take part in the study. This study will update our understanding on a wide range of topics including access to services, benefits, employment, early reach support and technology. Initial findings will be published in April 2015.

Secondary analysis of LOS and USoc

The “Circumstances of people with sight loss” report used data taken from the Life Opportunities Survey and Understanding Society to compare the situation of people with sight loss to other disabled people and the general population. Both of these government-funded surveys have now been updated. RNIB and NatCen Social Research will be conducted secondary analysis of this new data and publishing a report and tabulation tool to help users access relevant information. These will be available in October 2014.

Certification and registration of children and young people

In 2012 Dr Tammy Boyce of Imperial College London carried out research for RNIB into to map the process of certification and registration of adults, its impact on certification and registration rates, and to understand the patient experience. Barriers and delays to certification and to registration were identified and specific recommendations given for different stakeholder groups in order to improve the process. This research is now being repeated to investigate the process of certification and registration of children and young people from birth to 17. Initial discussions with health, social care and education professionals suggest that while some of the obstacles to certification and registration of adults apply to children too, there are also specific factors relating to children. Telephone interviews are being carried out in 5 sites across England with professional from health, social care and education. Interviews are also being carried out with parents of children who are registered to get a better understanding of their experiences of the process. The project is expected to be completed in July 2014.

Secondary analysis of the Millennium Cohort Survey (MCS)

The Millennium Cohort Study (MCS) is a longitudinal survey of 19,000 children born in 2000. It covers a variety of topics including the children's health, wellbeing, behaviour, education and social experiences. In 2012 the Royal London Society for the Blind (RLSB), with RNIB as partner organisation, commissioned the National Centre for Social Research (NatCen) to carry out statistical analysis of the MCS with the aim of identifying children at the age of seven with a sight impairment and comparing their experiences with those of the other children in the survey who did not have a sight impairment. The findings focused on children's emotional wellbeing, friendships and social inclusion, educational attainment and experiences of school, and their families' economic circumstances. RNIB and RLSB are again working in partnership with NatCen to analyse findings from a follow up study of the same children at the age of 11. The report is expected to be available in September 2014.

Community Engagement Projects

Stopping people losing their sight unnecessarily is a key priority for RNIB. The development of seamless eye care pathways and an evidence base about what works in relation to sight loss prevention lies at the centre of this priority.

To this end, RNIB has developed five Community Engagement Projects (CEPs) across England, Northern Ireland, Scotland and Wales. Each CEP is piloting a range of evidence-based eye health interventions to understand how effective they are at increasing service uptake and treatment concordance.

The interventions have been piloted. London School of Hygiene and Tropical Medicine, the independent evaluators are currently collecting post intervention data. The process, outcome and economic evaluation results will be available in June 2014.

Find out more about this project in the document below, or watch the video.

Optimum VI project

This major new project is arousing international interest. It is the first national research study of its kind into the early development of babies and young children with a visual impairment. The findings are likely to have significant implications for our understanding about the best ways to support babies with a visual impairment and will be of interest to both professionals and parents in the UK and internationally.

The project is a funding partnership between Fight for Sight, RNIB and Great Ormond Street Hospital Children's Charity.

Between now and summer of 2015, the research team will be continuing to recruit infants aged 0 to 15 months with severe to profound visual impairment to take part in the study (excluding children with additional severe motor or hearing impairments) and would like to hear from families anywhere in the UK. If you are interested in taking part or are working with a family of a baby with a visual impairment that you think may be eligible, please contact Dr. Elena Sakkalou or Dr. Michelle O'Reilly on 020 7599 4124 or email e.sakkalou@ucl.ac.uk, m.oreilly@ucl.ac.uk.

Some important findings are emerging from the research into early development of babies with vision impairment such as a relationship between young children's social skills and particular patterns of responses in the brain to emotional stimuli. These preliminary findings have been presented by the researchers at international conferences.

Transitions study: longitudinal study from age 14 of blind and partially sighted young people in the UK

The Visual Impairment Centre for Teaching and Research (VICTAR) at the University of Birmingham is undertaking a 5-year longitudinal study. The current phase of the project which runs from 2012-2015 is funded by the Nuffield Foundation and is looking at the transition of blind and partially sighted young people from the age of 14 years of age through to employment or further education.

The key objectives of the project are:

To track the process of transition for blind and partially sighted young people from age 14 for the next five years.

To identify the roles of professionals involved in the transition from education to employment.

To identify the factors that affect a young person's chances of gaining employment.

The project involves a longitudinal survey of two groups of blind and partially sighted young people in school starting in Years 9 and 11. It is following them as they make the transition from school into further and higher education, training and employment. This project is planned to run from 2010 to 2015.

Electronic Certificates of Vision Impairment

RNIB and Moorfields Eye Hospital NHS Foundation Trust are running a three year project to test electronic Certificates of Vision Impairment (CVI). The project will pilot and evaluate an electronic CVI (eCVI) to simplify and speed up the certification process and enable blind and partially sighted people to access help and support more quickly and improve their quality of life.

The eCVI project is working with 4 sites in England – 4 hospitals and 4 social services departments. The first two sites are expected to launch in spring 2014 and the second two sites will launch in autumn 2014.

An audit of the referral service has been developed to determine the level of benefit and acceptance from the patient perspective and to ensure everything has worked as expected from both the NHS and Social Service perspective.

The project is expected to finish in April 2016.

Understanding the impact of Personal Independence Payment

In April 2013 the government introduced major changes to the benefit system in the UK. As part of this, Personal Independence Payment (PIP) has replaced Disability Living Allowance (DLA) for people aged 16 to 64.

RNIB, working with Sense and Thomas Pocklington Trust have commissioned a joint team from Birmingham University and NatCen Social Research to investigate the impact of PIP (and potentially wider changes in welfare benefits) on people with sensory impairment.